Redefining Cancer Care: Putting Equity, Quality, and Patients at the Center

The cancer journey is different for every person, and intertwined in this experience is the quality of care available to each patient. I learned this first-hand: My grandfather was diagnosed with prostate cancer a few years ago, and he has recovered. Although this experience was hard for our family—and especially for my grandfather—he was fortunate to receive quality care that was digestible for him. While fluent in English, my grandfather is an immigrant and has been deeply involved in the Indian community throughout his life. “My care was efficient, and while hard at times to endure, very easy to understand,” he says.

I will forever be grateful for the many doctors, facilities, and treatment plans offered to my grandfather, but I am mindful that not everyone receives this same level of care. For many patients, differences in culture and language, distance from treatment, and other barriers can impact the quality of care. Others suffer when insurance companies will not cover care at advanced facilities or approve therapies that their doctors recommend. After studying public health at the University of California, Berkeley, I have come to see just how large a role social epidemiology plays in the battle against both communicable and chronic disease. One thing is clear: Equitable care does not yet exist.

Joseph Alvarnas, MD, Professor of Hematology at City of Hope Comprehensive Cancer Center (Los Angeles, CA), has shared insights that arise from his advocacy to improve experiences for cancer patients across the United States. “For many models in health care, the ability to think about patients in general and standardized ways may help to present a path toward better care and more efficient care. Broadly based pathway care for patients with diabetes, hypertension, and hyperlipidemia may be powerful in improving population health. In the domain of cancer care, however, genericized care models are not only wrong, but it can also lead to low-value care, worse patient experience, and inferior outcomes,” Dr Alvarnas explains.

The fight to improve cancer care includes aspects of both equity and quality. Over the past decade, health insurance coverage has been expanded to millions of previously uninsured Americans, but there is evidence that not every patient has the same access or the same quality of care.^1-3 Dr Alvarnas notes that the quest to improve care and care equity, it is essential to through 4 essential pillars, and over time, drive change to make cancer treatment more efficient and patient centered.

The pillars are:
1. Patient- and family-centered care that begins with a focus on individual needs, including goals of care;

2. Leveraging the use of precision medicine to design treatment around individual genomic data, comorbidities and functional status in order to ensure the best outcomes for patients;

3. Giving all patients access to a robust set of clinical trials, no matter where they live; and

4. Investing in the equitable of care of underserved communities.

Equity and Social Determinants of Health
While “equality” means that each person is given the same opportunities and resources, “equity” recognizes that each person starts from different circumstances, and that resources and opportunities should be allocated as needed to achieve fair solutions. As medical treatments and technologies improve, it is easy to downplay the importance of achieving equity, especially in cancer care.

The most important drivers of inequity in cancer treatment are social determinants of health (SDOH). These refer to factors such as a person’s overall health, economic stability, social community, and level of education, all of which can significantly affect access to quality health care. These SDOH carry with them the many inequities present in American society. A 2020 progress report from the American Association for Cancer Research (AACR) revealed that disparities in care mostly affect minorities and those from groups with lower socioeconomic status, due to a lack of access to care, lack of education surrounding treatment, and the rise of narrow provider networks that limit patient choices.³ I hope to shed some light on the hard truth that disparities in cancer care exist, and that only through efforts by both those in power and their constituents can we alleviate the stress on those battling cancer.

Differences by race are among the most important—and concerning—factors that contribute to cancer health disparities in the United States. Data from the AACR report show that 21% of Black Americans were living below the federal poverty level in 2018, along with 18% of Hispanic Americans and 8% of non-Hispanic White Americans.³ Closely related are the levels of uninsured in each group: 10% of Black, 18% of Hispanic, and 5% of non-Hispanic White Americans were uninsured as of 2018.³ You don’t have to be a public health expert to realize that such stark differences are tied to disparities in quality and access to cancer care.

Some may propose a simple solution: Expand access to insurance. However, research has shown that access alone is not enough to close the equity gap. A key article in the Journal of National Comprehensive Cancer Network (NCCN), explored the connections between race, insurance coverage, and quality of care. The authors concluded that Black patients and those on Medicaid were “less likely to receive guideline-concordant medications compared with White patients and those who had managed care insurance plans.”1 In fact, the study results showed that “having Medicaid also decreased a patient’s likelihood of receiving a therapy endorsed by NCCN; this effect was seen in breast, prostate, colon, rectal, gastric, and liver cancers.”¹

Thus, having insurance does not guarantee access to quality care. A 2022 paper from Kaiser Family Foundation reported that members of minority groups consistently experienced lower rates of cancer screening, diagnoses at later stages, and longer treatment delays. Depending on the cancer, this work also concluded that minority patients may be less likely to receive guideline-recommended treatment.⁴

Patients who are poor or live in rural areas may also lack access to local care and transportation.5 The transportation gap is especially pronounced if one needs access to one of the 52 National Cancer Institute-designated Comprehensive Cancer Center (NCICCC) located across the United States. In order to most effectively serve patients with cancer, we need to build systems that are scalable to meet patient needs wherever they are. Unfortunately issues like narrow networks, transportation, and socioeconomic status (including financial resources) may limit that access and compound the complexity of the patient journey.¹

Clinical trials, which may offer the best chance of survival, are out of reach for many patients. A study by Columbia University and the American Cancer Society looked at 13 studies involving almost 9000 cancer patients and found that “[more than] half of patients didn’t have a trial available to them at their institution…and almost a quarter were ultimately deemed ineligible” when they applied for a trial.⁶ One can only imagine that SDOH play a role.²

The Emotional Toll of Cancer
Amid tangible barriers to quality care, the underlying mental health issues that cancer patients face should not be overlooked. The fight against cancer can be just as much emotional as it is physical. It is estimated that “16% to 25% of cancer patients develop depression…and that doctors do not recognize about 35% of these cases and many patients remain untreated.”⁷ This risk of depression rises if patients receive care that is subpar, especially care that does not align with NCCN guidelines. While some mental health symptoms can be treated with therapies, the most effective support is a strong social network. As noted by Edwards and Clarke in Psychooncology, “a lower incidence of depression is associated with the ability of patients...to freely communicate information to their physicians and family members.”⁷
The results of multiple studies, however, have shown that patients from lower socioeconomic backgrounds may have a harder time discussing with doctors the physical and psychological issues they face.^8,9 Whether this is due to issues of health literacy, or a reluctance to engage providers in more directed conversations regarding treatment alternatives, more resources are needed to improve health care literacy, built trust amongst underserved groups, and create community-based resources for advancing patient agency throughout the cancer journey.

Lack of equity in cancer treatment is multifaceted and demands a more complex solution than simply “expanding coverage.” Barriers such as a patient’s type of insurance, travel to comprehensive facilities, and poor health literacy rates—driven by and reflective of SDOH—have put the highest-quality cancer care out of reach for many, and these barriers will continue to claim lives if nothing is done.

What is the solution? One estimate posits that more than 34% of cancer-related deaths could be prevented if disparities in socioeconomic status were alleviated.1 Although these challenges do not live solely within the health system, there are some health care system–specific steps that can be taken now. An upstream approach that puts more resources into health education at the elementary or high school level would ensure that over time, we can improve access to care, understanding of treatment, and coverage to the individuals most in need. For far too long, science has been separated from emotional underpinnings in the hopes data-driven approaches can resolve the underlying social/economic issues in our society. However, science often fails to account for the needs of specific communities. What may be beneficial for one group may not be feasible for others. Expanding coverage and creating new treatments, as useful as they may be, can at times overshadow the issues that specific communities face when it comes to treating cancer.

Data from HHS show that as of June 2021, 31 million people have coverage either through the Affordable Care Act’s Health Insurance Marketplace or through Medicaid expansion, and since then numbers have only continued to grow.¹⁰ While this expansion in coverage has led to improvements in screening and better treatment for chronic conditions, it masks the difficulties in keeping the quality of cancer care standardized across all US medical practices. Despite progress in reducing cancer mortality, evidence shows that patients from minority groups frequently receive care that is of poorer quality than the care White patients receive.^3,4 Too often, minority patients do not receive care that aligns with NCCN guidelines.¹ These are issues that need to be brought to light. Only through iterative collaboration amongst community oncologists, academic centers, patients, families, communities, payers, and policy makers can these disparities be highlighted, and cancer care redefined. 

AUTHOR INFORMATION. Sachin Sengupta is a student in public health at the University of California at Berkeley. He will receive his bachelor’s degree in spring 2022 and will be a candidate for a master’s in health administration at Columbia University this fall.

References

1. Nardi EA, Wolfson JA, Rosen ST, et al. Value, access, and cost of cancer care delivery at academic cancer centers. J Natl Compr Cancer Netw. 2016;14(7):837-847. doi:10.6004/jnccn.2016.0088
2. Clair K, Chang J, Ziogas A, et al. Disparities by race, socioeconomic status, and insurance type in the receipt of NCCN guideline concordant care for select cancer types in California. J Clin Oncol. 2020;38(15 suppl):abstr 7031. doi:10.1200/JCO.2020.38.15_suppl.7031
3. Sengupta R, Honey K. AACR Cancer Disparities Progress Report 2020: achieving the bold vision of health equity for racial and ethnic minorities and other underserved populations. Cancer Epidemiol Biomarkers Prev. 2020;29(10):1843. doi:10.1158/1055-9965.EPI-20-0269
4. Tong M, Hill L, Artiga S. Racial disparities in cancer outcomes, screening, and treatment. Kaiser Family Foundation. February 3, 2022. Accessed March 23, 2022. https://www.kff.org/racial-equity-and-health-policy/issue-brief/racial-disparities-in-cancer-outcomes-screening-and-treatment/
5. Lam O, Broderick B, Toor S. How far Americans live from the closest hospital differs by community type. Pew Research Center. December 12, 2018. Accessed March 23, 2022. https://www.pewresearch.org/fact-tank/2018/12/12/how-far-americans-live-from-the-closest-hospital-differs-by-community-type/
6. Forster V. Why do only eight percent of cancer patients in the U.S. participate in clinical trials? Forbes. February 19, 2019. Accessed March 23, 2022. https://www.forbes.com/sites/victoriaforster/2019/02/19/why-do-only-eight-percent-of-cancer-patients-in-the-u-s-participate-in-clinical-trials/?sh=169ba09177e9
7. Edwards B, Clarke V. The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients’ illness characteristics on depression and anxiety. Psychooncology. 2004;13(8):562-576. doi:10.1002/pon.773
8. National Institutes of Health State-of-the-Science Panel. National Institutes of Health State-of-the-Science Conference statement: Symptom Management in Cancer: Pain, Depression, and Fatigue, July 15-17, 2002. J Natl Cancer Inst. 2003;95(15):1110-1117. doi:10.1093/jnci/djg014
9. What are social determinants of health & how can oncologists address their impact on patients? News release. American Society of Clinical Oncology; February 17, 2021. Accessed March 21, 2022. https://www.asco.org/news-initiatives/policy-news-analysis/what-are-social-determinants-health-how-can-oncologists
10. New HHS data show more Americans than ever have health coverage through the Affordable Care Act. News release. HHS; June 5, 2021. Accessed March 23, 2022. https://bit.ly/3utXSFc